Informational Needs of Women with Vulvar

Annals of Nursing and Practice
Central
Research Article
Informational Needs of Women
with Vulvar Neoplasia in the
First Week after Hospital
Discharge – A Mixed Methods
Study
Cornel Schiess1, Stefan Ott2, André Fringer3, Silvia Raphaelis4,
Andrea Kobleder5, Dinah Gafner6, Judith Jung-Amstutz7, Birgit
Werner8, Michael D. Müller9 and Beate Senn10
1
Institute of Applied Nursing Sciences (IPW-FHS), University of Applied Sciences FHS
St.Gallen, Switzerland
2
Department of Economy, University of Applied Sciences FHS St.Gallen, Switzerland
3
Institute of Applied Nursing Sciences (IPW-FHS), University of Applied Sciences FHS
St.Gallen, Switzerland
4
Department of Nursing Science, University of Vienna, Austria
5
Institute of Applied Nursing Sciences (IPW-FHS), University of Applied Sciences FHS
St.Gallen, Switzerland
6
Department of Gynecology and Obstetrics, Bern University Hospital, Switzerland
7
Department of Gynecology and Obstetrics, University Hospital Zurich, Switzerland
8
Department of Gynecology and Obstetrics, Cantonal Hospital St.Gallen, Switzerland
9
Department of Gynecology and Obstetrics, Bern University Hospital, Switzerland
10
Institute of Applied Nursing Sciences (IPW-FHS), University of Applied Sciences FHS
St.Gallen, Switzerland and Sydney Nursing School, University of Sydney, Australia
*Corresponding author
Cornel Schiess, Institute of Applied Nursing Sciences
(IPW-FHS), University of Applied Nursing Sciences
FHS St. Gallen, Rosenbergstrasse 59. 9001 St. Gallen,
Switzerland, Tel: 41-0-71-226-1527; Email:
Submitted: 04 September 2015
Accepted: 25 September 2015
Published: 28 September 2015
ISSN: 2379-9501
Copyright
© 2015 Schiess
OPEN ACCESS
Keywords
•Informational needs
•Patient-Reported Outcome
•Prevalence
•Vulvar cancer
•Vulvar Intraepithelial neoplasia
Abstract
This study aimed to describe (1) the prevalence of informational needs in surgically treated women with vulvar neoplasia during the first week after hospital
discharge, (2) associations between informational needs and age, type, disease stage and the extent of surgery and (3) additional informational needs. This
convergent parallel designed mixed-methods study was conducted in eight hospitals across Germany and Switzerland (Clinical Trial ID: NCT01300663).
Outpatients (n=65) rated items of the WOMAN-PRO instrument and added further notes. Five items concerning informational needs were analysed using
descriptive statistics and regression analysis. For notes (n=38) a qualitative content analysis was done.
The mean prevalence of unmet informational needs was 81.8%. The most prevalent unmet informational needs concerned disease (56 out of 65)
and treatment (56 out of 65). Informational needs were found to increase in relation to the type (i.e. pre-cancer, cancer) (b = 3.05, p = 0.039), whereas
they decreased in relation to the extent of surgery (b = -2.411, p = 0.035). Notes showed three main topics regarding additional informational needs
“understanding the illness”, “caring for yourself” and “going forward”.
Data revealed a high prevalence of informational needs and the WOMAN-PRO instrument can guide patients and clinicians in assessing informational
needs.
ABBREVIATIONS
SD: Standard Deviation; VC: Vulvar Carcinoma; VIN: Vulvar
Intraepithelial Neoplasia; VN: Vulvar Neoplasia
INTRODUCTION
Vulvar neoplasia (VN) comprises both vulvar intraepithelial
neoplasia (VIN) and vulvar carcinoma (VC) [1,2]. VIN is a rarely
occurring chronic vulvar skin change, which can evolve into an
invasive carcinoma [3]. The incidence of vulvar squamous cell
carcinoma showed a statistically significant increase from 2.0
per 100,000 in 1989 to 2.7 per 100,000 in 2010 [4]. For VIN an
incidence of 7 per 100,000 is assumed [5]. This development
is discussed in context with the rising prevalence of human
papilloma virus, which is considered a risk factor for VIN and
vulvar squamous cell carcinoma [6]. Surgery is the standard
therapy [7,8]. After surgery, women experience wound-related
symptoms and complications, difficulties in everyday life and
psychosocial discomfort [9]. Post-surgical discomfort often
Cite this article: Schiess C, Ott S, Fringer A, Raphaelis S, Kobleder A, et al. (2015) Informational Needs of Women with Vulvar Neoplasia in the First Week after
Hospital Discharge – A Mixed Methods Study. Ann Nurs Pract 2(4): 1034.
Schiess (2015)
Email:
Central
prevails over several months and is associated with age, course
of disease and treatment [6,10].
Women with surgically treated vulvar neoplasia (VN) report
receiving insufficient information. From their point of view
further information is needed, particularly during the first three
days after hospital discharge [11]. Specific needs are related to
topics like diagnosis, treatment, adverse effects, wound healing,
lymphedema, pain, sleeping and preventive interventions
[11–13]. Informational needs are defined as a perceived gap
between available information and knowledge with regard to
solutions [14]. So far, informational needs in surgically treated
VN patients have only received limited research. It is known that
the majority of surgically treated women with VIN were informed
non-systematically and some of the affected women have no
confidential relationship with medical staff [11].
Currently, in clinical settings informational needs are not
systematically assessed during hospital stays. As a result,
women are inadequately informed about diagnosis, treatment
and prognosis, despite their desire for up-to-date and accurate
information [12,13]. Additionally, they obtain only minimal
education regarding self-examination and self-care interventions
[13]. Moreover, due to the lack of confidential relationships with
medical staff, the women’s specific questions are answered with
general statements [15]. As a result, some patients do not feel they
are taken seriously [15]. However, women with VIN rely on health
care professionals, even they do not satisfy their informational
and counseling needs [6,12]. Lack of knowledge about VN and
internet-based information about excision provided by onlinesupport groups can have a frightening effect [13]. For this reason
a counseling strategy should be developed. Educational material
could support women in understanding their diagnosis and
prepare them for future disease-related events [13].
To ensure adequate support for surgically treated women
with VIN in all stages of the disease, Gafner et al. argue in favor
of investigating informational needs during the hospital stay and
providing adequate counseling by an Advanced Practice Nurse to
meet these needs [15].
For
gynecological
patients,
brochures,
individual
consultations with health care professionals and websites are the
preferred methods of providing information [10]. One promising
approach is video information, which could be adapted to VN
patients as well. As oncological research has shown, video
information in the context of screening, chemo- and radiotherapy
can reduce fear [16,17]. Additionally, the oncological literature
confirms the efficacy of information-related interventions
[18,19]. For example, Geller et al. conclude that cancer-related
information at the time of diagnosis increases learning in women
with ovarian cancer [19]. Information-related interventions
positively influence health-related outcomes [10], including
anxiety, self-care strategies, coping, satisfaction, treatment and
long-term effects [10,18,20].
The aim of the current study is to describe the prevalence
and type of unmet informational needs in women with surgically
treated VN. In addition, associations between informational
needs and age, type of disease (VIN or VC), stage of disease and
extent of surgery will be investigated.
Ann Nurs Pract 2(4): 1034 (2015)
The research questions are:
(1) How frequently do informational needs occur with
regard to disease, treatment, daily vulvar hygiene, wound care
and daily behavior in women with surgically treated VN during
the first week after hospital discharge?
(2) Are there associations between informational needs
and age, type of disease (VIN or VC), tumor stage of disease and
extent of surgery?
(3) What, if any, are the further informational needs in
women with surgically treated VN during the first seven days
after discharge?
MATERIALS AND METHODS
Study Design
A convergent parallel design with equal weighting of
quantitative and qualitative research was used. Study results were
collected in parallel, analyzed independently and subsequently
synthesized [21]. This design allows a description of the
prevalence of five informational needs, assessed by a checklist, as
well as the identification of further relevant informational needs,
evaluated on the basis of free text.
The study was part of an international multi-center crosssectional study (Clinical Trial ID: NCT01300663) and analyzed
obtained data concerning informational needs for the first time.
Sample and setting
Women were continuously recruited from in-patient
gynecological units and from out-patient facilities of four Swiss
hospitals (University Hospitals of Basel, Bern and Zurich, Cantonal
Hospital of St.Gallen) as well as from four German university
hospitals (Berlin, Düsseldorf, Freiburg and Munich). Women over
18 years old, with knowledge of oral and written German and
surgery due to clinically diagnosed VN were included. Women
with cognitive limitations, severe psychiatric comorbidities or
incurable disease were excluded.
Variables and measurements
Socio-demographic and medical data for the participating
women were collected. Socio-demographic variables are related
to age, civil status, nationality, educational status, current
employment status and life arrangement (e.g.). Medical variables
included type of disease (VIN or VC), tumor stage and treatment,
among others.
Informational needs of women with surgically treated VN
were collected quantitatively using the WOMAN-PRO instrument
seven days after hospital discharge. The instrument presents an
excellent item- and scale-content-validity-index of 1.0 [2,22].
Quantitative data concerning prevalence and associated burden
of informational needs were assessed by means of a checklist
with regard to five items: disease (1), treatment (2), daily vulvar
hygiene (3), wound care (4) and everyday behavior (underwear,
hobbies, sexuality) (5). Both prevalence and associated burden
of informational needs were estimated on a four-point Likert
scale (none, little, quite strong, very strong). Qualitative data
were collected on the basis of optional notes in a free text section
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below the checklist, within the WOMAN-PRO instrument. Free
text was provided by 38 women to describe their concerns and
wishes.
surgery. As a dependent variable we chose the weighted mean of
severity scores of our five items concerning informational needs.
We performed tests at a significance level of 5%.
Data was collected between October 1, 2010 and October 31,
2011. At hospital admission, nurses and physicians informed all
patients about the study. Hospitalized women with interest in
participation received a package including information about the
study, informed consent and questionnaires (WOMAN-PRO, SF36
and a socio-demographic data sheet).
Free text boxes from the WOMAN-PRO instrument were
transcribed. Both brief bullet points and long sentences were
possible in accordance with the principles of content analysis [23].
Interpretation of the transcripts was supported by using MAXQDA
(Version 11, Release 11.0.7). The lead and secondary authors
read all the free text several times to get an overview of the topics.
The primary author summarized, explicated and structured the
women’s statements. During the process of inductively obtaining
an overview of categories and topics, preliminary results were
critically reflected, recurring topics identified and statements
verified in comparison with the original material. The analytic
process was performed by six researchers with experience in
qualitative methods and/or practical experience in counselling
for women with VN. The research group discussed the results
of the qualitative data analysis with regard to similarities,
differences and contradictions. The consensus obtained was
compared with the original material by the lead author. This
procedure enhances the credibility and trustworthiness of the
interpretation [23]. Quantitative and qualitative data results are
described separately in the Results section. Synthesized results
are presented in the discussion section.
Data Collection
To ensure data security, women were asked to return
informed consent and completed questionnaires in a separate
stamped addressed envelope. As a reminder, the last author
contacted all participating women by phone one week after
discharge.
Women who did not return the questionnaire were
considered non-responders. Returned questionnaires were
verified for completeness. To ensure the completeness of the
quantitative data, women were contacted by phone if items were
answered incompletely. Clinical information was extracted from
the medical patient documentation by the last author.
Quantitative Data Analysis
To ensure high data quality, we entered data for a randomly
selected 20% of questionnaires into the system twice. Input error
was less than 1%. Socio-demographic, medical and WOMAN-PRO
items were analysed descriptively in IBM SPSS Statistics Version
20 (IBM, Armonk, NY, USA) by using absolute and percentage
frequency, medians and interquartile range, means and standard
deviation (SD). Missing data is indicated in all figures. Numbers
and percentages as well as severity and distress of informational
needs were calculated based on the five listed items for all patients.
For patients with existing informational needs we calculated
means and standard deviations for severity and distress. Based
on linear regression we investigated whether and to what extent
aggregated and weighted informational needs can be explained
by variables of age, type of disease, stage of disease and extent of
Enrollment
137 women with vulvar surgery examined
for eligibility
78 confirmed eligible questionnaires
(100%)
Qualitative Data Analysis
Ethical Considerations
The study was approved by the ethics committees of the
cantons of Bern and Basel (Nr. 17/11), St. Gallen (Nr. 10/123/1B)
and Zurich (Nr. 2010-0467/0) as well as Berlin, Düsseldorf (Nr.
3505), Freiburg (Nr. 385-09) and Munich (Nr. 412-09). To ensure
data security, the master list, permitting identification of all
participating women, was retained securely in a locked cabinet,
separate from the study data.
RESULTS AND DISCUSSION
Results
Sampling characteristics: During the study period, 137
59 excluded
42 did not meet eligibility criteria
28 with major communication difficulties
7 with terminal illness
4 did not have vulvar neoplasia diagnosis
3 with comorbid severe psychiatric disorder
17 declined to be assessed for eligibility
13 did not respond to the questionnaire
Quantitative
Analysis
65 questionnaires included in the
quantitative part of the study (83.3%)
27 did not add additional free text answers
concerning further symptoms, concerns and wishes
Qualitative
Analysis
38 questionnaires included in the
qualitative part of the study (48.7%)
Figure 1 Flowchart Sample (83.3 % participation rate).
Ann Nurs Pract 2(4): 1034 (2015)
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«How can I get along with everyday life?»
«from dependence to independence»
Coping with restrictions, burden, symptoms as well as associated
feelings and thoughts, e. g.
«What will happen, if it is not possible to ‘simply’ cut it out?»
Categories of informational needs
Understanding the
disease
«Why am I affected by this
kind of cancer?»
• Diagnosis
• Consequences of
therapeutic interventions
Going forward
Caring for yourself
«Can I influence the
disease?»
«More detailed instructions
about toilet behavior»
• Self-observation
• Wound care
• Vulvar hygiene
• Recurrence prophylaxis
• General behavior,
particularly concerning
sports and sexuality
Desires concerning further life
«I hope the disease never comes back again»
Organisational, physical, emotinoal, spiritual and social-activityoriented wishes, e. g. «holidays by the sea» or
«time for my own needs»
Figure 2 Overview of topics to informational needs.
women were surgically treated for VN. Due to inclusion criteria,
42 women could not be included, 17 women did not wish to
participate and 13 did not return the questionnaire (Figure 1).
So data for 65 patients was considered in the analysis. Of these
65 women, 38 gave voluntary and unprompted free text answers
which were interpreted in the qualitative analysis (Table 1).
Quantitative Results: The mean prevalence of unmet
informational needs was 81.8%. The most frequently mentioned
needs were related to disease (56 out of 65), treatment (56 out
of 65) and wound care (52 out of 65). These are also the most
pronounced informational needs on the scale from 0 to 3 (disease:
mean 1.95, SD 1.11; treatment: mean 1.86, SD 1.13; wound
care: mean 1.75, SD 1.19). The associated distress surrounding
informational needs was also analysed. The most distressing
informational needs were those concerning everyday behaviour
(mean 1.56, SD 0.95), wound care (mean 1.52, SD 0.98) and
disease (mean 1.42, SD 0.83).
The aggregated informational needs have significant
associations with the variables “type of vulvar disease” (VIN /
VC) (b = 3.05, p = 0.039) and “extent of surgery” (b = -2.411, p =
0.035).Informational needs were found to increase in relation to
the type of vulvar disease, whereas they decrease in relation to
the extent of surgery.
Qualitative Results: The analysis of the qualitative data
produced an overview of topics regarding informational needs
(Figure 2). The three most important categories of informational
needs are understanding the disease (1), caring for yourself (2) and
Ann Nurs Pract 2(4): 1034 (2015)
going forward (3). They include relevant topics, e.g. diagnosis (in
1), self-observation(in 2) and recurrence prophylaxis (in 3) and
are described in the following sections. These topics represent
areas of insufficient information experienced by surgically
treated women with VN during the first seven days after hospital
discharge.
(1) To better understand the disease, the affected women
requested repeated information about the cause of disease, the
diagnosis and consequences of therapeutic interventions.
One woman asked herself: “Why am I affected by this kind of
cancer?” (S6-15).
(2) Within the caring for yourself category the central topics
are self-observation, wound care and vulvar hygiene. The women
expressed a need for information about body signals deserving
special attention. For example, one participant was concerned
about smell: “What can be done about that unusual smell?” (S707). They implicitly report about information needs concerning
wound care and daily vulvar hygiene. One woman wanted “more
detailed instructions about toilet behaviour” (S5-12). Many were
unsure about the safety of bathing. In terms of wound care, they
often lacked knowledge about the duration of wound exudation.
Skills related to pain assessment, bowel management and coping
with swelling in the groin area also require specific information.
(3) The category going forward comprises the need for control,
as the following quotation reveals: “Can I influence the disease?”
(S6-07). Control primarily refers to the disease (e.g. recurrence
prophylaxis) and associated altered behaviour. Secondly,
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knowledge could influence the feeling of control, e.g. knowledge
about the frequency of follow-ups or groin swelling. From the
question “Is there a risk for cellular changes in scar tissue due to
irritation?” (S6-07) we conclude that women affected by VN want
to receive information about recurrence risk. Organisational
factors like knowledge about the frequency of follow-ups or
essential information about symptom management could
have influenced the perception of control. The question about
“therapies taken into consideration” (S7-03) refers to the request
for participative decision-making in the context of recurrence
prophylaxis. General behaviour, particularly concerning exercise
and sexuality was another important issue for the participating
women. They wanted to know when they could return to exercise
and if there were risks concerning sexuality.
The informational needs described above seem to be doubly
influential. Firstly, they refer to the question “How can I get
along with everyday life?” Secondly, they are associated with
desires concerning further life. In order to transition “from
dependence to independence” and to master daily challenges,
women seem to require coping strategies. These are essential
for managing disease-related restrictions, burdens, symptoms
and associated feelings and thoughts. One woman describes
coping as emotional relief based on trust in her gynecologist.
She writes: “My gynecologist supports me in all matters – I can
talk about everything with her” (D1-03). Cognitive strategies,
e.g. self-attributions like “Farewell, cancer, don’t come back”
(S8-01) or withdrawing as a behaviour-related strategy are
ways of coping. “Staying in nature to harmonize feelings and
thoughts” (S7-03) is one way to cope with feelings like grief or
anxiety. Several women felt vulnerable e.g. before going to sleep.
The dependency on physicians they experienced is implicitly
expressed in their wishes for a preset follow-up appointment.
Thoughts emerging in the mornings and evenings primarily
relate to bodily and temporal issues. “What will happen, if it is
not possible to simply cut it out?” (S6-14). Thoughts like this
concerned affected women. One patient writes that her “lower
part of the body is like its ‘turned off’” (S6-01). Another woman
describes something strange growing within her body – a feeling
that was incomprehensible for her.
A positive approach can influence patients’ thoughts, as
expressed in statements like “apart from this, I am perfectly
happy” (S8-04). As preconditions for satisfaction the participants
mention pursuing their hobbies and wound healing. With
regard to the temporal dimension they mention patience, hope
and questions about the duration of healing. This is reflected
in wishes to go on living like “using the time until I am healed
to care for myself” (D2-25), “cherish every minute” (D4-01),
“holidays by the sea” (S8-11) or “time for my own needs” (D202). The women’s wishes can be categorized into three types:
organisational (“smooth daily spiritual routine” (D4-23),
physical(“I hope the disease never comes back again”) (S8-08),
emotional, (“trying to accept the changes to my body”) (S7-03)
and activity-oriented (“doing and not doing what I want”) (S811). As the above considerations have shown, the question “How
can I get along with everyday life?” and the desire to go on living
mutually influence each other.
Discussion
To the best of our knowledge, this is the first mixed-methods
Ann Nurs Pract 2(4): 1034 (2015)
Table 1: Socio-demographic characteristics of the sample (N=65).
Characteristics
Number of patients per country (n, %)
Germany
Switzerland
Age (years); (n, mean, SD)
No. (%)
32
33
Vulvar intraepithelial neoplasia
20
Missing
3
Vulvar cancer
Marital status (n, %)
Married
Single / widowed / divorced
Missing
Nationality (n, %)
German
Swiss
Others
Missing
Smoking (n, %)
At time of diagnosis
Missing
Level of education (n, %)
10 or less school years
More than 10 school years
Missing
Current employment status (n, %)
Working
Not working
Missing
Health insurance (n, %)
General
Half private / private
Missing
Living arrangement (n, %)
Alone
With a partner or others
Missing
Wound management (n, %)
Without help
Help by a health care professional
Help by a non-healthcare professional
Missing
42
27
36
2
(49.2%)
(50.8%)
(45.3;
16.8)
(58.3;
13.7)
(52.7,
24.0)
(41.5%)
(55.4%)
(3.1%)
35
22
4
4
(53.9%)
(33.9%)
(6.2%)
(6.2%)
19
43
3
(29.2%)
(66.2%)
(4.6%)
7
2
40
23
2
50
13
2
25
37
3
43
13
6
3
(10.8%)
(3.1%)
(61.5%)
(35.4%)
(3.1%)
(76.9%)
(20.0%)
(3.1%)
(38.5%)
(56.9%)
(4.6%)
(66.2%)
(20.0%)
(9.2%)
(4.6%)
study concerning informational needs of women after surgically
treated VN during the first seven days after surgery.
As the results show, informational needs go unsatisfied
in 81.8% or cases and are related to type of disease as well as
influenced by surgical treatment. Unsatisfied disease- and
therapy-related informational needs are the most frequently
mentioned. Nevertheless, the women found missing information
concerning everyday behaviour the most burdensome. This result
is consistent with our qualitative identified informational needs
categories understanding the disease, caring for yourself and going
forward, which are influenced by requests from everyday life and
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Table 2: Medical characteristics of the sample (N=65).
Characteristics
Type of vulvar disease (n, %)
Condyloma accuminatum
VIN (II & III)
Vulvar squamous cell carcinoma
Melanoma
Other vulvar carcinoma
No. (%)
7
(10.8%)
37
(56.9%)
2
(3.1%)
13
3
(20.0%)
(4.6%)
Missing
3
(4.6%)
0
20
(30.8%)
Stage of disease (AJCC Groupings) (n, %)
Ia and Ib
II
32
3
(49.2%)
(4.6%)
III
2
(3.1%)
Missing
3
(4.6%)
IV
5
(7.7%)
Previous diagnosis with VIN or VC (n, %)
12
(18.5%)
Outpatient surgeries (n, %)
5
(7.7%)
Missing
Missing
Surgical therapya (n, %)
Local excision
Laser-therapy or skinning vulvectomy
Partial vulvectomyb
Radical wide excision/vulvectomyc
Exenteration
3
3
8
15
31
7
1
(4.6%)
(4.6%)
(12.3%)
(23.1%)
(47.7%)
(10.8%)
(1.7%)
Missing
3
(4.6%)
Sentinel
28
(43.1%)
Removed lymph nodes; median (IQR)
1
Lymph node dissection (n, %)
Inguinofemoral
Missing
Adjuvant postoperative therapyd
Length of hospitalization (days); median (IQR)
Missing
Complications (n, %)
Dehiscencee
19
(29.2%)
(0; 7)
3
(4.6%)
10
(4; 14)
2
(3.1%)
6
(9.2%)
5
(38.5%)
Filling out the diary (days after discharge); median
7
(7; 8)
(IQR)
Abbreviations: IQR: Interquartile Range (1.quartile; 3.quartile); VIN:
Vulvar Intraepithelial neoplasia; AJCC stage groupings: American Joint
Committee on Cancer’s stage groupings
a
Surgeries were performed at all hospitals according to the guidelines of
the German Society for Gynecology and Obstetrics.
b
Partial vulvectomy: anterior, posterior or unilateral surgical treatment.
c
Radical wide excision/vulvectomy incorporates a bilateral surgical
treatment.
d
Adjuvant postoperative therapy: chemo- or radiotherapy during
hospitalization.
e
For the complication ‘dehiscence’ data from 13 patients were available
due to missing data. Data about complications was only available for
patients with a follow-up visit in the hospital.
Ann Nurs Pract 2(4): 1034 (2015)
Table 3: Informational needs prevalence including number and
percentages of women experiencing informational needs, mean
severitya and distressb scores (N=65).
No. (%) of patients
Distressb
Need for more
with
Severitya
Mean
Mean (SD)
information about
informational
(SD)
needs
1.42
Disease
56
(86.2%) 1.95 (1.11)
(0.83)
1.27
Treatment
56
(86.2%) 1.86 (1.13)
(0.82)
1.41
Daily hygiene of the vulva
51
(78.5%) 1.66 (1.18)
(1.00)
1.52
Care of the wound area
52
(80.0%) 1.75 (1.19)
(0.98)
Behaviour in everyday life
1.56
(e.g. underwear, hobby,
50
(78.1 %) 1.66 (1.16)
(0.95)
sexuality)
a
Mean severity scores refers to (0 = non-existent; 1 = low; 2 = moderately;
3 = large).
b
Mean distress scores refers to (0 = not at all; 1 = a little; 2 = quite strong;
3 = very strong)
Footnote:
For the informational need ‘behaviour in everyday life’ data from 64
patients were available due to missing values.
Table 4: Informational needs and their associations to age as well as
disease- and treatment-related variables (N=65).
Outcome variable: Mean
informational needs
B
t
Sig.
95% CI
experience scorea
Age
0.026 0.996 0.323 -0.027; 0.079
Years (1-)
Type of vulvar disease
VIN (incl. condylomata), Vulvar 3.050 2.113 0.039 0.159; 5.940
cancer (1,2)
Stage of vulvar disease
0.233 0.505 0.616 -0.691; 1.156
AJCC Groupings (0-IV)
Surgical therapy
Excision & laser-therapy &
skinning
-2.411 -2.163 0.035 -4.644; -0.179
vulvectomy, partial vulvectomy
b
& radical
wide excisionc (1,2)
a
Informational needs experience mean scores were calculated as
continuous summary scores for the whole sample: informational needs
severity scores [0-3] x informational needs distress scores [recoded 1-4].
b
Partial vulvectomy means an ant-, posterior or unilateral surgical
treatment.
c
Radical wide excision/vulvectomy incorporates a bilateral surgical
treatment.
Abbreviations: CI: confidence interval; AJCC stage groupings: American
Joint Committee on Cancer’s
wishes concerning further life. By means of regression analysis it
was shown that a more severe type of disease is associated with
higher informational needs. In contrast, the study reveals that
more extensive surgical treatment evokes fewer informational
needs after discharge.
The high prevalence of informational needs in our population
is in accordance with the gynecologic oncology literature [25].
Beesly et al. [25] explain the high prevalence, among other
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factors, of reduced sexual reaction, lymphedema of lower limbs
and difficulties in relationships. The fact that a more severe
type of disease is associated with higher informational needs
confirms the high relevance of counselling in the post-surgical
phase, particularly for women with more severe types of disease.
As missing information concerning everyday behaviour is
experienced as most burdensome, two issues could particularly
be relevant for counselling: the most frequently stated troubling
themes and the more rarely named but very distressing themes.
The result that more extensive surgical treatment evokes fewer
informational needs after discharge could be explained by the
fact that women with extended surgery are heavily affected by
physical and mental symptoms as well as treatment-related
complications. This confirms our hypothesis that, in the view of
the women affected, for the first days after discharge recovery
takes priority over informational needs. The newly developed
categories of informational needs in women with VN provide
important themes for counselling and allow a patient early
personal reflection about their specific informational needs.
For nurses involved in counselling a systematic assessment is
possible. Thus, individual and participative counselling of women
with VN is encouraged. Our qualitative informational needs
categories are consistent with the informational needs categories
described by Papadakos et al. [10] and, along with the high
participation rate, also underline the relevance of informational
needs in nursing counselling in the context of interactions in
everyday life and wishes concerning further life.
Women desire understandable information on vulvar hygiene
and recurrence protection. In this regard systematic assessment
of informational needs is crucial, particularly for women who
have difficulties in expressing and verbalising their concrete
requirements to their health care professionals. Moreover,
assessment of informational needs is an essential basis for
effective counselling, as support can be matched with patients’
unmet concerns.
Patients receiving sufficient information tend to be more
satisfied, participate more fully in consultations, are less anxious
and can better cope with their situations [20]. As a contribution
to coping, techniques addressing behavioural change, e.g.
feedback, action planning with regard to future change and social
support could be considered [26]. Satisfaction of informational
needs concerning cancer diagnosis, treatment and long-term
effects are also associated with health-related outcomes and an
increased sense of control [10,18,20]. To achieve these outcomes
by providing information, an empathy-based and appreciative
relationship between patient and counselling persons is required,
as these two elements are essential for confidence-building
communication, characterized by mutual understanding [27].
To achieve a more comprehensive understanding and to
validate the obtained results, studies with more extensive sample
sizes are necessary, as well as qualitative single interviews
including affected women and counselling staff. The development
of a multidimensional comprehensive model for the entire course
of disease in women with VN could be a possible aim for future
studies. This model could consider informational needs including
possible temporal changes, because in our study it remains
unclear whether and how informational needs change over time.
Ann Nurs Pract 2(4): 1034 (2015)
As the literature indicates, informational needs last for months
[22]. Understanding this would support counselling staff in
incorporating informational needs at the right time.
The results of our study have to be interpreted in the context
of potential limitations. Due to the small sample size, it is not clear
how representative the results are. Additionally, it is possible
that further significant associations could not be detected due to
limited statistical power. The women’s intention behind writing
free text answers remains unclear. If women did not participate in
the qualitative section, it remains unclear whether they effectively
did not have any further needs or did not express them due to the
absence of an explicit request. The short hand-written notes also
limit the conclusiveness of the qualitative analysis. Furthermore,
we do not know if there are any systematic differences between
responders and non-responders to this qualitative part of the
investigation.
CONCLUSION
Despite the existing limitations and focus on the first seven
days after hospital discharge, the results of the current study
give initial insight into the experience of women with surgically
treated VN. There is a paucity of knowledge concerning
unsatisfied informational needs of women with surgically
treated VN. WOMAN-PRO data revealed a high prevalence
of informational needs and distress as well as a call for a
comprehensive and systematic informational needs assessment.
This should focus on everyday life and should be integrated into
counselling. The WOMAN-PRO instrument proved as a feasible
and targeted measuring device for a standardized informational
needs assessment and can support affected women in dealing
with their informational needs.
ACKNOWLEDGEMENTS
We would like to thank all the women who participated in
this study. We also extend our thanks to healthcare professionals
from the University hospitals of Basel, Bern, Zurich, Berlin,
Düsseldorf, Freiburg, Munich and the Cantonal Hospital, St.Gallen
for providing access to the research field. We would also like
to thank Heidrun Gattinger, Mag., RN, for their professional
exchange and Dr. Diana Staudacher for editing assistance.
Conflict of Interest
The authors declare no conflicts of interest. This work was
supported by a grant from the Swiss Foundation for Cancer
Research (Project no. 02456-08-2009). The content of this
publication is entirely the responsibility of the authors and does
not necessarily reflect the official views of the Swiss Foundation
for Cancer Research.
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Cite this article
Schiess C, Ott S, Fringer A, Raphaelis S, Kobleder A, et al. (2015) Informational Needs of Women with Vulvar Neoplasia in the First Week after Hospital Discharge
– A Mixed Methods Study. Ann Nurs Pract 2(4): 1034.
Ann Nurs Pract 2(4): 1034 (2015)
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